Monday, October 25, 2010

A "fork-spoon" is NOT a spork. It's not a hybrid-it's the real thing, one spoon, one fork, stuck together with scotch tape. The creation of my little man, Frankie, and already being ordered by Victor and Becca because of its very efficient mission. Use the spoon for your rice, turn it around and pick up your chicken with the fork. Very, very, smart!

These inventive creations are the everyday things that make kids in the Autism spectrum very interesting human beings. There is an upside to being "different" and seeing the world in a unique way - it's called creativity. Frankie can be rigid at times and struggle with complying with society rules but his very weakness represents his most valuable strength. The invention of the "fork-spoon" by Frankie came about as a response to not wanting to comply. Here I am, asking him at dinner if he wanted to have a spoon or a fork for eating his dinner and what's his response? I want both. Of course, I said he couldn't have both - why???? Just chose one or the other! He just couldn't understand why he couldn't have both and to be honest, now that I look back, I don't see why either! Once he stayed on this course, I went along with the idea and the result was the "fork-spoon" you see in this picture. Very handy....I must say it actually takes skill to wrap up those two together but mostly to alternate them while you are eating. It's priceless to watch.

I figured after so many dark blog entries lately, I should get back to the root of why I started to write about our family's journey into the Autism spectrum; the desire to highlight the positive and not the negative. I take little pieces of our days and freeze them in time on this blog, usually so I can remember what is so special about our little guy and why we are fighting so hard to help him get as far as he wants to go - the sky is the limit.

The "fork-spoon" is only one of the many gadgets he goes around the house creating to make life interesting and different. We are so lucky to be part of his unique world.

Saturday, October 23, 2010

At this local juice bar in Mount Lake Terrace, a "slap in the face" will cost you a dollar...I got a real one recently for free, compliments of my little Frankie.

I don't know if you have ever gotten a slap in the face but I don't think I remember getting one; perhaps I earned one or two in my teen years but honestly, they must not have made an impression because I can't remember if I did or not. The one I got a couple of days ago burned my face for a few hours but I know I will remember it for the rest of my life.

Needless to say, we are still struggling with Frankie at school. Things are not getting better, perhaps they are getting worse. Everyday I pray that he didn't hurt anybody or that he is not so frustrated when he gets home that his whole day is ruined. All the while, I have been trying to be positive and have infinite patience with him but here is the deal, I had not yet gotten hurt. My turn came up and I got a slap in the face. In the face! Boy, it hurt my pride more than it did my face. What was I doing wrong? Why is this kid not getting it? Why is he so angry he is hurting me, his mom, the one person he probably loves the most? I was speechless. For once, I was speechless. His therapist says we talk too much to Frankie - well, this time, he got no words from me for sure. Of course, time-out followed the infamous slap for Frankie but the one who needed it the most was me. There I sat, struggling between being angry and being embarrassed...All the bells and whistles went off in my head and the haunting stories I read in the past years about parents physically abused by their teen Autistic kids came bursting in. I kept on telling myself that was not my story. I refused to allow that to become Frankie's story either. My sweet kid is somewhere inside this angry child and I know he will come out, sooner or later. Regardless, my worst fears were taking shape at that moment - Frankie has been hitting, biting, kicking, running away - it's all falling apart and I don't seem to be able to glue it back together. I know some parents will be thinking at this point that Frankie has a discipline problem. Perhaps that we are not consistent enough or strict enough. What I see is a kid in pain and struggling to deal with an environment he does not fit in. My job is to help him cope and I am failing miserably.

Since the slap in the face, I have woken up to a new reality. These are the years that will make it or break it - either I help Frankie cope and fit in or I miss the boat completely and he will struggle with regulating his emotions for a long, long time. I choose to conquer, and I know I will. Frankie needs me to fight and not sit here and cry over a burning face and a hurt pride.

The slap in the face at the juice bar might wake you up in the morning, but the one I got that day did more than that, it woke me up for the rest of my life and I don't think I will fall asleep again.

Sunday, October 17, 2010

A change of clothes,A stress ball,A plush Sponge Bob,Happy books,I SPY books,A timer,A pouch to hold certificates awarded for being “good,”Noise canceling headphones. No, not these yet - I am still deciding if I should include them or not…

What kind of backpack is this? It's the one my preschooler carries around every day. Not a typical backpack for a little one; some of his classmates don’t even take backpacks to preschool but Frankie does and we are constantly adding more stuff to it. This is his gear for battle. Being a preschooler is not easy but being a preschooler with PDD-NOS is really hard. The noise, the rules, the schedule, the noise. Did I mention the noise? It can’t be easy to function when so much is expected from you. I know it’s not easy for me, so I can understand how hard it’s for him. I guess I can see why he is not all excited about going to school every morning; it’s not all fun and games when you are picked to be the goose at duck, duck goose game and you don’t want to run after your classmate because you are afraid of failure. It must be crushing to get up in music class and give up your spot in the rug when you have claimed it as your own. It’s not fun to have a meltdown because your hot dog bread came apart at lunch and you have ketchup on your shirt. And it’s certainly not fun to ride a noisy school bus for half an hour before you finally make it home. I keep on telling him school is fun. Now that I think about it, it really is not. When I came to that realization, I stopped trying to make Frankie like school and I just focused on getting him prepared. Here is how it goes: Frankie, do you need down time? Here are some happy books. Do you need stimulation? Here are your I Spy books. Are you mad? Squeeze the stress ball. Are you sad? Hug your Sponge Bob pal. Are you having a hard time cleaning up, packing up and lining up? Play a “beat the timer” game with your teacher and win a certificate!

Man, it’s exhausting. But it has do be done. We are lucky to count with such great professionals who want the best for Frankie. They endure being pushed, kicked, hit and lately bitten. It's not as bad as it was and he's slowly understanding school is not going away and he must find a way to cope. The strategies we are using are working and his days are not so challenging at times, but each day is different and a new situation teaches us he might need another “tool” to help him endure the process....like the noise level getting too much to handle. Are really headphones the answer?

When I look at my first-grader's backpack and it feels so light, it makes me want to cry. It’s just not fair. I open it and I see a folder, a bottle of water and a snack. No “tools” to cope. No timer. No headphones. I pray that one day Frankie can also leave all of these things behind and take a lighter backpack to school. I know that day will come and when it does, I will blog about it. In the mean time, his backpack will be heavy but it will help him get where he needs to go.

The economy is pretty bad these days and even the devil can use a break, so I heard he was holding a garage sale recently to make some extra money. He was selling, among other things, all of his special weapons to tempt man....all but one. There was a special box he did not include in the sale because that was his most important weapon and he couldn't do his job without it. Guess what was in the box? It was "despair." Once he hits a poor soul with despair, he is fried. No hope means no praying. What for? If there is no hope of a prayer being answered, despair leads you in all sorts of different ways, but never in the way to the light. Clever Lucifer!

So this was a joke I heard in church last Sunday. I don't particularly write much about sermons and I don't preach. I just tell a bit of my life, my thoughts and a lot of the crazy things that go on inside my head. This stuff I heard did not just came and went from my head - it stayed inside and it has been going around in circles. The devil of the story was right on the money. Despair IS indeed, the best deterrent from a life of prayer. Regardless of religion, any person who believes in a superior being prays in one way or another, mainly because we want to have hope, - well, I already wrote once about hope so I am not writing about that again - we want to believe that things will eventually get better. And they do. Eventually, they do; if you wait long enough. Now, if you are not willing to wait, somehow things do get a bit, let's say, bleak. Despair sets in. The Devil is in business.

When I moved to Seattle, I heard so many stories about how EVERYONE got depressed here at one point or the other. I heard that, statistically speaking, Seattle is the city where more suicides happen in the United States. This is eerie, I don't argue with that but I always wondered what exactly can get a person so desperate and so sad that they decide dying is better than any form of life. Even when I think I might consider this alternative if I am terminally ill, in a lot of pain, or hopelessly dying, even then, I wouldn't choose to kill myself. I guess it's just genetics and I will never be able to relate to that choice, made by others in such high percentages. I like to think that rather than it being a genetic thing it's a "hope-prayer" thing. It has been very few and far in between the times when I have hit rock bottom but even at the bottom of the hole, I always managed to get some sort of rope sent down to me from up above and I never despaired, and when I did, it was usually momentary insanity - nothing that a little praying couldn't take care of to get me back on track.

Prayer. This word is not politically correct lately. Nobody wants to be told what to do, what to say and what to believe in. Granted, it's a free country and unless there is "something in it" for us, we really don't want to be bothered. Well, there IS something in it for you when you pray. You might not get the answer you want, but you do get an answer. The most important thing that happens when you pray, meditate, count your beads or chant, is not the answer from God, it's that you stopped and went inside your own self to get the balance you need to wait, to make a plan, to get patience, to endure. The strength that comes from finding your center is the harmony that comes from praying. The best thing of praying is prayer itself and no devil can ever make you despair if you can find the answer to your questions within your own spirit.

Tuesday, October 12, 2010

"Being still" and "doing nothing" are not the same thing. I didn't hear this from the Dalai Lama, but from Jackie Chan. Jackie Chan might not be the best source for Zen-related advice but ever since I watched the new version of the Karate Kid this weekend, I have been thinking about that line from the movie. A dear friend of mine is always talking about reading the signs of the universe - he is a fan of Paulo Coelho, of course - but I would never expect to receive deep messages from a worldly movie like the Karate kid....see, the signs are everywhere and they come in all sorts of packages; you just have to be still and listen.

Being still....There is a new concept for me. If you know me, you know I am everything but still. Doing nothing is just not in my book - I hold world records for packing and unpacking an entire house; I can clean fast and well; I can get a "to do" list done in a flash. I am a mover - I am a shaker and I like things to roll. Now, being still, that's hard for me. At this point in my life, I am faced with many challenges and situations that require stillness more than actions. I can't rush into them and I have to be patient. This is a hard concept to grasp when I feel all the time that being still IS the same as doing nothing. But you see, I am not doing nothing, I am just....still. Things are falling into place like big pieces of a puzzle and I feel like I am seating around observing this crazy rain of events fall around me. The more I stay still, the better the view gets - it's not blurred by my constant running around, stressing much and accomplishing nothing. When I am still I am gaining strength, for when the time comes to get up and run, I will know exactly where to go and it will save me time. Stillness promotes inner peace and silence of the soul gives you clarity to understand what the next step will be.

I thought I had a crazy ride with Frankie's early intervention years, but I realize now that the ride has just begun. If I am not still, I will keep on missing the whole picture and I can only see fast flashes that run wild before my eyes. I have made that mistake before, over and over again. I was told before that I didn't "aim and shoot" but just shot and forgot about aiming. I am busy aiming now and not shooting just yet; waiting for the right angle, for the right moment...being still so I don't miss. Being still and doing nothing is definitely NOT the same thing.

Monday, October 4, 2010

The other day I drove through one of the streets of my daily routes and the trees were all yellow! When did this happen? Well, I guess I can ask the same thing of the year all together...where did it go? Just a little bit ago I was looking forward to the "glorious" Seattle Summer that everyone was telling me about (which was indeed, glorious!) and now I am digging out recipes for Thanksgiving day! Nonetheless, Autumn brings so many wonderful changes along with its changing leaves....the cooler weather, the comfort foods and Halloween, my daughter's favorite holiday. This season, I can't help but to remember my dear aunt, Orfa, who is not in this earth anymore but lives on through The Memory of Trees.

A long time ago, when were all still living in Nicaragua, la Tia Orfita was lucky enough to travel to the United States in connection with her work for the department of education. I will never forget her stories of the changing leaves in Washington DC. Through her stories, my 10-year-old-child imagination could see the yellows and the browns and how beautiful Autumn was in the far away lands of the north. Later on, after I moved to Miami, I still could not have the chance to see those changing leaves because of Miami's tropical weather. Whenever we traveled up North, I would miss the leaves and only got to see naked trees. La Tia Orfita traveled again, this time to North Carolina, again in Autumn, and the stories of the trees continued. She loved this scenery so much and described it with such joy that it was impossible not to fall in love with those burning red trees and yellow leaves although I wasn't 10 anymore.

La Tia Orfita is gone now but I remember her every time I see a tree with yellow leaves. I feel her soul when I admire the wonderful sights of the Fall season. After almost thirty years of the first time I heard from her about the great process of nature that is Autumn, I have finally watched with my own eyes, the wonderful festival of color of the changing leaves. I am enjoying every minute of this season as much as I enjoyed listening to my aunt's stories. The wait has been worth it.

Thank God for Autumn and thank God for aunts like la Tia Orfita.

Click below for a video of Fall paints/pictures around Seattle as well as some of Tia Orfita's pictures along with the sound track from Enya's The Memory of Trees.

Saturday, October 2, 2010

The lottery - who doesn't want to win it? All you have to do to get it is to play! That's it.

I have a funny story about the lottery....when I was in HR, I used to enjoy doing new hire orientation; it was so much fun for me! One of my favorite ice breakers was to ask everyone what they would do If I would hand them a million dollars that day, you know, like winning the lottery - Pretty much everyone wanted to help their families, buy a home, pay off their debt and start their own business but the answers I really enjoyed were the fun ones! some people would just get really into the game and talk about what was secretly in their hearts - fun stuff like traveling, learning to play an instrument, going back to school to study something that had nothing to do with their current career, and some even wanted to become writers or singers! There was always someone who wanted to get a face lift, perhaps a liposuction; others wanted to buy an expensive sports car, a boat or a motorcycle, The crazier the stuff, the more fun we had with the game. When you are given a million dollars, and you are allowed to make your dreams come true, the true desires of your heart come out freely - who doesn't like to dream? I know, I do! But here is the pickle....most of the time, we are afraid to make dreams come true because we see them as that, just dreams, unrealistic wishes that we know we must not discuss with others so we don't sound immature or just plain irresponsible. We are too busy making ends meet and coping with what life throws our way that it's easier to live on passive mode than on proactive awareness. When we leave it up to chance, just like winning the lottery, not only can we afford those sound, responsible things, like paying off our homes or debts and putting our kids through college, but we can also indulge on the other stuff, the fun stuff we don't talk about. Neither the practical things or the crazy dreams are impossible to obtain without the lottery; they just take longer and require effort and patience, besides a good plan to get them accomplished. It all starts with knowing what we want and that's really the tough part.

Whenever we played the million dollar game, I also remember that employees wanted to know what I would do with the money too. My answer was always the same....I would turn around and give it to my husband or to my dad; "they would know what to do with it." I thought that was a funny way to end the game, and we all had a good laugh with it - the sad truth was that I really didn't have any priorities of my own other than the ones that were given to me by others. This was shocking because I'm well known for having many plans, usually Plan A is only the beginning, I also have Plan B, Plan C and of course, an emergency plan when the first three fail! The problem is that my great plans are made to obtain practical and sound goals. They usually benefit others and have to do with grown up issues. I didn't have fun plans. Most of all, I didn't have a plan for ME because I didn't have a clue of what was inside of my own heart. What were MY heart's desires? No idea. I came to realize that I was in a lot of trouble. I had no desires, no dreams, nothing. In the middle of my very busy and "meaningful" life, I remained empty. I was oblivious at the time that I lacked knowledge of my own self and I used to be happy by making sure others were happy. At one point or the other, you come to realize that being a daughter, a wife, a mother does not define YOU - these are only hats we wear at any given point in our lives but the head wearing those hats is also connected to a heart, which lies right were your treasure can be found. If you don't find that treasure, then your heart will be homeless and that's how it will remain until you take the time to figure it all out. Sooner or later, it has to be done.

I am happy to report that lately I have been wanting to win the lotto like never before. This time, I do have a plan for the money. I don't want my husband or my dad to decide what to do with it. I can see clearly what are the things that I would do with my millions. I'm sure now that I have defined what makes ME, Orfa Baez, very, very happy....and I don't need the lotto to do it, it would just take me there faster. Since I have more chances of being hit by lightning than winning the lottery, I must continue working for those crazy things that take me to my happy place, whether they are naive, childish or irresponsible, they provide a home to my heart and where my heart is, I'm sure to find my treasure!

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